a year later

It has been about a year since my last blog post and almost exactly 14 months since my dad’s death. Here are some thoughts about what has happened along the way.

My mother’s grief

When I last wrote, my mom was determined to move on and not get stuck in a grieving process. To that end she decided she didn’t want to participate in the group counseling offered by hospice, even though she liked and respected the woman leading the group.

I continued visiting my mom once a week. My mom continued accumulating piles of things that she wanted to “go through” but they just ended up in her bedroom, unsorted. Soon her bed was inaccessible due to the piles of papers, and she moved into Dad’s room to sleep. She quit cooking (never a passion for her) and subsisted on ham and cheese sandwiches. She set up her sewing machine to work on a quilt for her great-granddaughter (born March 2017) but never got to it.

My visits were mostly spent helping out in small ways. Sometimes I did some minor cleaning for her, sometimes I ran errands for her or took her grocery shopping. We often went out for lunch. I offered to help with her “sorting” project but she said she didn’t think I could help.

One day my husband came with me to visit Mom. Mom began telling him how she felt unable to concentrate on anything or accomplish anything. It was strange to hear her tell him this while I sat there listening. On a visit soon after that, I insisted upon tackling the stuff on her bed and we made a lot of progress. The project became something manageable for her instead of something overwhelming and out of control.

My mom gradually began coming out of her fog. She started keeping up with her housework and meeting friends for coffee. After the one-year anniversary of my Dad’s death (Dec. 10), my mom attended the grief support group offered by hospice. She told me she felt she was getting through her grief but was impatient that she wasn’t further along. She was amazed that others in the group were experiencing the same feelings and struggles that she was. Now when I visit Mom we often spend our time browsing in the giant second-hand store near her home, which we both enjoy. My mom has asked me to help her paint her living room once the weather gets warmer.

My grief

I continue to dream about my dad from time to time. The last time was about a month ago. I dreamed that he was alive and confused. I felt very guilty because we had all thought he was dead and had been neglecting him.

After visiting my mom weekly this year — spending time with her that is not centered on caring for my dad — I have grown much closer to her. I enjoy her and feel very comfortable around her. I sometimes confide in her and we often laugh together. I’ve recently realized that she has by far become the “friend” that I see the most often. Although I’m very glad our relationship has grown so much this year, I think it would probably be good for me to balance my friend circle again.

Lately the 150-mile round-trip drive to visit my mom has felt arduous. I don’t know what has caused this change. It could be the colder weather. Also I am now working three days a week and sometimes finding it difficult to squeeze everything I need and want to do into the remaining four days. But truthfully: Sometimes I just waste my time off resisting doing the things I know I need to do. I don’t know if that is a signal that I need to make a change in my routine or if it is just a mood thing or what. There are other things unrelated to the focus of this blog that have created stress for me this year, and those things are also resolving somewhat. So I wonder if something in me is just starting to feel like it is okay to break down a little bit now.

There are other updates to give you but I’m going to sign off for now. I don’t know if I’ll write a Part II update soon, and/or if I’ll return to regular blogging, but if I do you’ll be the first to know!

 

 

 

 

guest post by my sister

Today’s blog post is the first one by a guest blogger! My sister shares her thoughts on coping strategies, relating to aging parents, and grieving the loss of our dad. I’m so pleased to be able to offer you another perspective on this blog’s theme. Thanks, Kristin! (Note: In the photo above, Kristin and I are sitting on Dad’s lap, he’s resting his chin on Kristin’s head.)

I am not a writer by nature. I don’t tend to need to write things down to help me process things. Although I don’t think those things are necessarily wrong, I just don’t utilize those methods for me. That being said, the thought of blogging doesn’t come to the forefront of my mind, but since my sister asked if I’d like to share my perspective of everything that has happened I think I’ll give it a go.

It has been a roller coaster of life since the summer of 2015. In July, my then six-year-old had an emergency appendectomy while at the same exact time my dad was in the emergency room with unknown stomach pain. A month later my dad had his gallbladder removed with some rough reactions to anesthesia. Fast forward to October when I had pneumonia followed by a bad fall resulting in a pilon fracture of my left ankle requiring two surgeries and six months to get back to some semblance of normalcy. As soon as that was over (as best I can remember) my dad had a series of falls culminating in the one my sister has referenced with a stroke that ended with him breaking his hip, staying in a nursing home, and ultimately his passing away.

Needless to say there was hardly time to come up for air between all of these things and it doesn’t seem to be letting up anytime soon now that my oldest child has been in the hospital for six weeks so far with three more to go before my first grandchild will be born. Coping for me, in many ways, has just been like treading water and hoping to stay afloat. Thankfully I am a stay-at-home mom and have allowed myself to rest as I felt I needed to. The other thing that has helped even more than the aforementioned thing is my faith in Jesus Christ and a loving church family that I know has held me up in prayer when I couldn’t do it myself.

I have been fortunate that I live right by my parents and because of that I have been able to build a closer relationship with them. When I was younger it wasn’t always easy. We didn’t see eye to eye and we still have different opinions about some things, but as the years went on we have come to have, I believe, a mutual respect for one another.

The hardest time I had in this whole season of life was those last few days before my dad died. It was physically and emotionally taxing. Even though I have a strong Christian faith I have struggled with death and the unknown of it all. I had secretly hoped that I wouldn’t be present when he physically passed because I wasn’t sure how I would handle it or what impact it would have on me. The night before my dad died I felt led by the Lord to have a time of singing some of his favorite worship songs at his bedside. It was a beautiful and sweet time in God’s presence. The following afternoon I watched my dad take his final breath.

It wasn’t until a couple of weeks later that I started having trouble sleeping. Flashbacks of him in his last moments and songs I had sung would come flooding back and disturbing my peace. In those moments I took time to cry, pray, talk to my dad, and read my Bible.

I still struggle with the idea of death at times but not about the times I shared with my dad. The times I had and the memories we created are precious to me especially the last time that he was awake and alert. He told me he was tired. I told him he could go to sleep if he wanted to, that I would be leaving shortly anyway. He looked at me and told me he would wait to sleep until I had left. He wanted to be awake to spend his time with me. When I left we shared a sweet hug and a kiss on the cheek. That was our last time talking… for now.

toward feeling accepting

It has been a long time since my last post. Posting last time actually dumped me into a mild depression for a day where all I did was sit around and read a book. Usually blogging helps me to frame my experiences but that time it just sort of brought everything more painfully into focus.

But the main reason I haven’t written is that I’m struggling with writing about my mom with the frankness that I like about my blogging to date. I didn’t have that same struggle writing about Dad. But after some thought I’m going to go ahead and do the best I can because I think it is still useful to me and potential readers.

I read somewhere that one of the difficulties dealing with aging parents is that it can stir up old family issues among siblings. I can’t say that has been my experience but my sister might see it differently. (I’ve invited her to write a guest post sometime but she has so far declined.) But as my mom ages I have occasionally found myself unexpectedly face-to-face with old feelings and frustrations about our mother-daughter relationship that are rooted in the past.

For the most part I felt accepting of my dad as he aged (for instance, see ashes are ashes and all i know is that i want to be there). I had struggled with that in the past (see the personal part of the practical and the personal), but by the time he was aging I was over it. Basically I had realized (1) he wasn’t able to give me what I had thought I needed from him, and (2) I didn’t need it from him anymore anyway. This had opened me up to appreciating him and loving him in a very satisfying way, and I only regret that I didn’t have a longer time to experience that with him.

Unfortunately I am not at that point with my mom and I really really want to get there. Unfortunately I have not had a lot of success so far with squeezing my eyes shut and pumping my fists up and down trying to make myself feel differently (ha).

With that groundwork laid, I want to spend the balance of this post describing a couple things that are happening to my mom frankly and fairly to the best of my ability.

When a dog isn’t just a dog

My mom got a dog from the local humane society about two months ago, a couple weeks after my dad’s death. Cassie, an eight-year-old miniature poodle mix, weighs about eight pounds. While my mom delights in Cassie’s cuteness and intelligence, she also complains about her. She asks to go out a lot (sometimes Mom suspects just to get the treat she expects afterward). In spite of this, Cassie frequently has accidents in the house, even when my mom is home. Cassie pulls on her leash when they go for a walk. Cassie is fearful of other dogs. Cassie always wants my mom to sit with her and pet her which inhibits my mom’s progress with her ongoing sorting-through-things projects (see things i don’t know).

To various degrees (and so far with little success) my mom has tried to control these things that she dislikes about Cassie (getting a litter box, enrolling in obedience training). I had puzzled about this complaining/controlling phenomenon until my husband simply said, with great gentleness, “Mary. Really? It’s like your dad.” Light bulb.

Doing the right thing

My niece (Alyssa) has been in the hospital for six weeks now. After her water broke early during her high-risk pregnancy, she is waiting until the 34-week mark at which labor will be induced. Although my mom and Alyssa are close, my mom has not been to the hospital to visit her. My sister visits her daughter a couple of times a week and could easily take my mom along since she lives right next door. At first my mom’s knees were bothering her. Then she had another minor non-contagious but inconvenient health issue. When that resolved, Mom needed to find someone who would let Cassie out while they were gone. That was solved, but then Mom’s health issue flared up again.

I know that Alyssa would very much like my mom to visit her at the hospital. Plus Alyssa faithfully visited my dad when he was in the nursing home. I know from experience that when someone comes to support you in a hard time you’re grateful forever. When they don’t come you feel hurt, there’s no way around it. I usually get over it by telling myself that they just didn’t know it was important because they haven’t been through it. It’s hard for me to imagine that my mom doesn’t know that this is important. And I don’t buy these excuses of hers.

I wanted to confront my mom about this but when I saw her yesterday I didn’t. I don’t know why. I worked on her taxes and then we went out for lunch. I looked at my mom across the table and she looked very beautiful to me. My mom reminisced about her days as a fifth-grade teacher, and she looked wistful. She asked me if she and my dad should have let me skip a grade in school way back when (I never knew that was an option). She seemed a little anxious that they had made a bad decision. She observed that being such an introvert it would have been hard on me socially to skip ahead. I told her I agreed. What does it matter now?

I had wanted to confront my mom about not visiting my niece because I didn’t want to aid and abet her in thinking not going was okay. But yesterday I let it go. I just didn’t bring it up. I think for a moment I realized that I don’t need my mom to do the right thing anymore. Maybe I’m getting closer to feeling accepting of her like I want to.

 

 

 

 

 

 

 

dreams, guilt, grief, selfishness, regret, faith

I continue to dream about my dad. A few nights ago I dreamt he called me on the phone and asked for my mom. I was so happy he wasn’t dead. I ran around with the phone in my hand trying to find Mom so he could talk to her.

Then I was standing in the streets of a city at night, talking with a friend. A parade of veterans, all old men, went by. I caught a glimpse of my dad jogging in the parade. I said to my friend — “That’s my dad! He’s alive!” I ran through the crowd after him but he was gone.

I’ve been visiting my mom once a week and calling her every other day for long talks. Sometimes it stretches an extra day between talks. She seems cheerful enough, but she is still pretty much keeping to herself. She will usually make a reference to Dad somewhere in the conversation: like we were talking the other day about how a lot of men prefer to read nonfiction and she said well Dad was just the opposite. And we were talking about how we’re going to handle her taxes this year and she said Dad always sent them in as soon as possible to get the refund. I feel a twinge of something — guilt? — that I’m not the one bringing him into the conversation.

My family is going through another crisis unrelated to aging parents so I won’t detail it here except to say that my niece’s high-risk pregnancy has landed her in the hospital for nine weeks, until the baby arrives. Things seem to be under control for now. The relevant point is that my mom seems oddly detached about it. I mean of course she feels bad for my niece, but she (my mom) isn’t as upset as I would expect her to be. Mom has some intermittent, relatively minor health issues of her own that she seems to be using as an excuse not to visit my niece at the hospital. I see this as similar to the self-protective emotional withdrawal I previously experienced as part of the grieving process (see “thoughts on grief” post).

My niece’s hospitalization is also relevant to this blog in that my weekly visits to her impinge upon my visits to my mom. The hospital is on the way to Mom’s house so I’ve been bundling the trips into the same day so far. This is shortening my time with my mom when I visit her. When my dad was alive I was visiting my parents twice a week but since his death I’ve been for lack of a better word more selfish with my days. This bundling thing isn’t going to work indefinitely though. I think my mom needs more attention and plus there are some additional practical things related to death affairs that I need to do now that some time has elapsed. We are still waiting for the death certificate (automatically kicked to the county medical examiner since Dad died within six months of breaking a bone, the broken hip that landed him in the nursing home). When we receive it there will be more work for me to do.

There are two other things I want to write about in this admittedly rambling post. One thing is that I’ve had some feelings of regret about deferring decisions about my dad’s care to my mom. Like the other day I was watching tv and saw an ad for an alternative medication that regulates blood coagulant levels and I thought if I would have pushed to get Dad on that maybe he wouldn’t have had the bleeding crisis that seems to have precipitated his death. I want to avoid similar regrets about my mom. But my mom (and my mother-in-law) have strong feelings about autonomy and personal stoicism. How do you balance respect with care? Which is of course the big question inherent in every aspect of caregiving for aging parents. I’d like to talk with my sister about this, and about grief, but feel that I can’t right now with everything going on with my niece.

The last thing is that I am really struggling with relating to my mom regarding politics and religion. This blog isn’t a platform for my own political opinions, and I’ve refrained from talking much about religion either. I feel like there isn’t enough commonality of religious experience to make discussion about it all that helpful here, or perhaps it is more truthful to say that I don’t talk about faith because it isn’t a big part of my own caregiving experience. Not having a shared faith with my mom makes it harder to comfort each other after Dad’s death. Having dramatically different political opinions in this politically charged time makes me feel less close to my mom.

I don’t think Mom feels the differences as acutely: she knows I don’t agree with her political views but she still shares them with me at times and I struggle to stay silent. Silence is easier for me than frustrating and futile arguing. She might suspect that we have different thoughts about religion but again I don’t discuss it with her as I fear that it would create a rift between us. I find things to agree with when she talks about religion with me. At a time when closeness would be helpful, these differences are making things harder for me. I hope that Mom isn’t feeling it.

 

how does death change relationships

My relationship with my mom is changing since my dad’s death, but I’m not sure into what yet.

For the past year or so my relationship with my mom was centered on helping her care for Dad and supporting her self-care. I visited them, arranged for eyeglasses and dentures, helped manage their finances, served as an advocate with agencies and institutions. With Dad gone I expected Mom would have more energy for her own self-care and she wouldn’t need as much support from me in that regard.

I knew that I would need to sort out the financial transition to her new income and make necessary notifications etc. But I thought with her mind less distracted by Dad’s welfare she would focus more on managing a budget and thinking about her own spending priorities. Instead, although she has been paying the household bills for about a year, Mom is actually acting less financially savvy than before.

I spent quite a bit of time with Mom for the first month after Dad died and called her each day. Now I’m shooting for visiting once a week and trying to strike a balance with phone calls. No matter how often I call we tend to talk for at least an hour, even though there isn’t that much to say. I feel like for her the time on the phone is trying to be like sitting in a room together, when for me it is trying to be a check in/catching up kind of thing. I knew that I would need (and want) to continue to visit and call her regularly, but I expected she would resume a more active role in friendships that she didn’t have time for while caring for Dad. I thought she might engage in a social group or community activity.

I know that my mom is still grieving the loss of my dad even though she says that she is moving on. I don’t mean that she is only sad exactly. I don’t know what she is feeling but I know that her life is very different now with him gone in a lot of ways: they were married for 51 years after all. A huge thing is missing. Also, every marriage takes compromise and now that constraint is gone. I watched my mother-in-law experience this 18 years ago when she was a 59-year-old widow.

I don’t want to contribute to my mom being helpless and lonely. Ironically I feel that if I help her too much that will be the result. I very much want to encourage her to work through this grief that she says she doesn’t have. I enjoy my mom and I want to see her and talk with her often. But I don’t want to run her life either through practical management or by being her primary social contact. One problem is I don’t know how much of her seeming reliance on me is grief, how much is habit, and how much is advancing age.

I can imagine some readers may think that it has only been 45 days after all since my dad died and I am perhaps being less patient than I should be with my mom. Good point: I mean was it really realistic to expect her to join a book club or whatever that fast? On the other hand, seems like the more dependent and less self-reliant she is starting out this new post-Dad life the harder it will be to change that.

I’m still grieving too of course and so it is a fair point to suggest that my own responses to things are not rock-solid. I may have an opportunity to get a part-time job doing something I really love and I get more and more excited about that each day. I feel like it would be good to have some other claim on my time and my mind. I hope that I’m not just seizing upon this as a convenient way to impose boundaries on my relationship with my mom and avoid my own grieving process. I don’t think so though.

thoughts on grief

Grief is attendant to any loss. Everyone grieves but sometimes it’s hard to recognize it. Grief is more than a feeling of sadness. Today I’m going to explore some facets of grief. It’s hard for me to discern Dad’s grief about dying because he was pretty confused mentally the last five months of his life. I want to think about that sometime, but today I’m going to look at my grief and my family’s grief.

Elizabeth Kubler-Ross famously identified five facets of grief in her book On Death and Dying. They are denial, anger, bargaining, depression, and acceptance. She presents them as a general progression although she notes that not everyone goes through every “stage” and that some facets are intermittent and coincident with others.

Denial and Anger

My dad died last month, but that was just a final loss in a succession of losses. He had some strokes, gall bladder surgery, and some falls over the two years prior to the final stroke and fall that broke his hip and put him in the nursing home last summer. After each of these incidents, Dad lost some mental acuity and mobility, more and more he lost interest in the effort to recover them.

For me, the big denial surrounding the loss of my Dad over time was the persistent thought that there was no physical reason why he couldn’t recover from each trauma. So in retrospect I see that I often looked for a “magic button” that would mobilize his resources to effect his own recovery. It seemed to me that my mom and my sister both experienced this same thought more as anger toward Dad than as denial.

After Dad’s death, the hospice team invited Mom to a group session for people surviving the death of a loved one. Mom is not interested in going. She says she doesn’t feel a need. She also says that she thinks people get stuck in support groups instead of moving on. I can’t judge that for her, but I think there is a chance that her attitude is colored by denial of her feelings of loss.

Over the past week or so I found myself feeling angry for no apparent reason, like when I began my morning yoga practice. The anger wasn’t directed at anything in particular that I could identify. I noticed after awhile that the anger seemed to be replaced by a sort of not unpleasant indifference to everything — I didn’t particularly want to do anything, like  work on a project or meet up with friends, but I was fine with doing whatever happened to be going on. My therapist (who I’ve seen twice since Dad’s death) thinks this is grief, the explicit anger morphing into a self-protective withdrawal of attachment to things as a reaction to loss.

Bargaining

I went through a short bargaining stage with my husband one evening in the middle of the four-day death watch. When Dad actually began actively dying it was a total shock. The hospice nurse was just as shocked as we were and even suggested that perhaps he wasn’t dying after all. I talked with my husband about whether a mistake had been made or what could be done to revive Dad. I also deeply regretted the fact that my family and I had respected the nursing home quarantine during the contagious “stomach flu” the days prior to Dad’s sudden turn. I feared that Dad had felt forsaken and had died of loneliness. My therapist sees this second-guessing as a form of bargaining. I didn’t stay in this phase for very long, in part because Dad was old and it had been so hard to keep him feeling safe and happy in the nursing home, and in part because it was too painful for me to think of his possibly terminal loneliness. Which I guess I may need to deal with later at some point.

I don’t know if my sister or mom have experienced any bargaining grief. My mom got a dog about two weeks after Dad died. I had wondered what she would do about the loss of her caregiving role after Dad’s death. For many years she had looked out for Dad and even while he was in the nursing home she visited him nearly every day. She had already become accustomed to living in the house by herself, so I don’t see the dog as solely about a need for companionship. I wonder if in a way getting the dog is sort of bargaining with Life, like filling this hole with something else to care for instead of taking time to accustom herself to the loss of her caregiver identity.

Depression

Kubler-Ross says there are two kinds of depression that dying people and their families go through. Reactive depression is about past or current losses, preparatory depression is about impending loss. I think I’m kind of going through a preparatory-type depression when I feel sad about the fact that I don’t have any more time to connect with my dad now that I’ve come to a better acceptance of him as a person and a father. As I wrote previously, I struggled with being close to my dad during my teen and younger adult years and came to a better understanding of him a few years ago. I now realize that part of my visits to the nursing home these past months were about a hope I had that Dad would recover some of his ability to be himself and feel happier and interact more meaningfully (which I also wrote about previously) — and that this would result in our being closer as adults than we had a chance to be in the past, now that I felt more acceptant of and less frustrated with him. Now that fantasy is gone forever.

 

 

Medicaid wrap-up

As promised, today’s post is a wrap-up of our Medicaid experience. For the full backstory, see blog posts tagged Medicaid.

Brief backstory: We applied for Medicaid for my dad at the end of August 2016. Medicaid does an evaluation of the candidate’s income and assets to determine how much he can contribute to his nursing home costs without resulting in “spousal impoverishment.” We received Medicaid’s determination in October and decided to request a hearing appealing the income part. The hearing was on November 23 and we received the conclusion on December 23.

Nota bene: As of 2016, Medicaid is a federal program administered by each state; details may differ from state-to-state. Also, my story focuses exclusively on the income division part.

The application process

The Medicaid application includes only seven lines to describe expenses: utilities (not including phone), mortgage, rent, real estate taxes, homeowner’s insurance, condo fees, and phone.

We were guided in the application process by the nursing home social worker. She instructed us to interpret “utilities” to include any monthly expenses, for example TV, internet, and car insurance in addition to the more straightforward heating, cooling, water, and sewer expenses. She also advised us to go through all of Mom’s bills and submit all expenses that weren’t food or clothing, so we included yard maintenance and car registration, inspection, and inspection-required repairs.

When we received Medicaid’s determination in October, we were told by a Medicaid worker that the only utilities that were considered in the division of income were heating, cooling, water, and sewer. She also informed us that any expenses not explicitly covered by the seven categories in the form were not considered. (Medicaid allows that candidate — in this case Dad — to retain income to cover his own health insurance premiums plus a personal care allowance of $50 per month. For some reason, I had also assumed that Mom’s health care premiums for Medicare and her supplemental insurance would be considered in the division of income determination. They were not.)

Lesson learned: The nursing home social worker was not as well informed as she could have been. This created a lot of extra work for me and gave us a false sense of optimism about the division of income. I think we would have been better served having a more realistic view of it during the two months we waited for the results.

The Medicaid division of income process

Once we requested the hearing appealing the division of income determination, we received a call from the person who would represent Medicaid at the hearing. I received detailed information about how the division of income is determined. Medicaid looks at your actual mortgage (or rent), real estate taxes, and homeowner’s insurance expenses and compares them to a set “shelter standard.” If your actual expenses exceed the shelter standard, then Medicaid increases the “minimum maintenance standard” to make sure that the you are able to retain enough of your income to cover your shelter expenses. The minimum maintenance standard is a set amount that is assumed to cover your shelter expenses and all other expenses not covered by the seven categories in the application form — so it is assumed to cover food, clothing, health, transportation, etc.

Medicaid does not look at your utility bills (heating, cooling, water, and sewer) and phone bill except to see if you are responsible for paying for these utilities (versus being included in your rent). Medicaid then allots a “standard utility allowance” that varies according to which of those utilities you pay for.

This information was pretty demoralizing. It felt like the process for determining the division of income was very cut-and-dried and that requesting a hearing was pointless.

Lesson learned: A hearing only gives you the opportunity to prove that your food, clothing, health, transportation, etc. costs exceed the minimum maintenance standard. Like if you had a chronic health issue that was very expensive, or if you had to rely on expensive transportation options to go to doctor appointments or get groceries, or if your actual heating and cooling costs were much greater than the standard, then a hearing would enable you to get your allotment increased to meet those needs.

After carefully going through my mom’s expenses and imagining every possible frugality, I determined that Medicaid’s allotment did in fact just barely meet her regular expenses. Mom’s biggest issue was that she had virtually no “safety net” for irregular expenses like fixing the brakes on her car or replacing a refrigerator, etc.

The Medicaid hearing

The hearing was held by conference call at a local social services resource center. We were told ahead of time that the hearing was less formal than it sounded and that we could present our case and provide additional documents. However, the hearing was actually very formal. We were sworn in, and the Medicaid representative presented several exhibits. She walked the hearing officer through the division of income process. I was glad that she had already done the same for me earlier. Then I had the opportunity to present our case.

Lesson learned: If I had known the proceeding was very formal I would have prepared a little differently. I would have gone with my inclination to be very professional and jargon-y and, well, ruthless. Instead, with my mom sitting next to me, I had decided to approach this with more, well, humanity. I employed an appeal to fairness rather than a sharp criticism of the process. (See my previous blog post on preparing for the hearing for more about that). I don’t know if a different approach would have changed the outcome.

The hearing officer’s decision

The hearing officer concluded (unsurprisingly) to confirm Medicaid’s spousal allotment was confirmed. The documentation provided with the conclusion quoted 42 U.S. Code § 1396r–5(e)(2) as stating that

If either such spouse establishes that the community spouse needs income, above the level otherwise provided by the minimum monthly maintenance needs allowance, due to exceptional circumstances resulting in significant financial duress, there shall be substituted, for the minimum monthly maintenance needs allowance an amount adequate to provide such additional income as is necessary. [emphasis mine]

The conclusion of the hearing officer was that none of Mom’s expenses constituted “exceptional circumstances.” (There was no mention of our argument that Mom lacked a safety net to meet emergency expenses.)

Lesson learned: If I had been aware of the pertinent statue, I could have quoted it and tried to focus my arguments on proving “exceptional circumstances,” in other words directly addressing the requirement of the law using its own terms. Could I have done that effectively? I don’t know.

In our case, since Dad has died we only have four months of nursing home expenses to meet under Medicaid’s determination, so it doesn’t matter that much. If we had to live with this longer, it would be a different story.

 

 

 

the practical and the personal

I don’t want to write post after post about my dad’s death because I imagine that would be, well, depressing and let’s face it: boring. So today I’m going to write about both the practical and the personal aspects of the days following my dad’s death and then I expect I’ll move on to other topics concerning “my aging parents” since I still have an aging mother and mother-in-law.

The practical part

My parents have both often stated their desire to be cremated. My sister and mom had previously selected a funeral home for Dad’s cremation and mom picked out an urn from their catalog. The bill for cremation, urn, and ten copies of the death certificate was $1,200. Over the next few days we discussed a private memorial service (planned for December 30, Dad’s birthday) and my sister took care of those arrangements.

I stayed with my mom for a few days and helped her with notifying various agencies and services that Dad had died. I consulted several resources, among them: Widowhood Checklist, Newly Widowed Checklist, and Surviving Spouse Financial Checklist.

A note about the timing of notifications. You don’t want to notify your bank right away if you have joint bank accounts, because then they will remove the deceased’s name from the account and won’t be able to deposit money that comes in for him. You also want to wait a little bit on canceling joint credit card accounts and opening new ones under the survivor’s name, I don’t remember why. Other things that can wait include changing the names on billed services (like utilities), on vehicle registrations, and on real estate titles. Since Dad wasn’t driving anymore we don’t have to contact their auto insurance, but we will contact their homeowner’s insurance later

Top of the list is to notify sources of the deceased’s income (for us that was Social Security, and Dad’s employer pension). That’s because you don’t want to get in a situation where they are looking to take money back down the road. You also for obvious reasons want to immediately notify any potential sources of death benefits, such as life insurance companies (for us this included the Veterans Administration). Another important thing: since Mom is covered under Dad’s employer-provided supplemental health insurance, we needed to find out right away about how that was going to work. I also contacted Medicaid and the mortgage company.

We found out that Mom’s reduced income from Social Security and Dad’s pension will be about $100 more per month than it was under the Medicaid division of income (see posts tagged “Medicaid” for more information).

The personal part

When we were in the nursing home for four days watching my dad die, I came upon a very helpful webpage on End-of-Life Signs & Symptoms. It is written directly but gently and I especially like how it gives you ideas of how to help the dying person. The site also framed Dad’s frequent deep sleeping, lack of interest in watching sports (a former passion), and delusions of being in Italy over the past couple of months as signs of the beginning of the dying process. I had been feeling very upset that my mom and I hadn’t visited Dad for about two weeks before he died (while the nursing home was dealing with a contagious virus): I feared that his sudden turn was a sign that he had died of loneliness. The site helped me see that he had probably been on the road to death for awhile.

As I mentioned already, I stayed with my mom for several days after Dad died. I scheduled an appointment with my therapist for later in the week and sort of postponed personally dealing with Dad’s death until then. But by the time I met with her, I was already kind of over feeling upset. I don’t know how I got over it, and I never cried (my therapist said I probably processed it subconsciously, like maybe while I slept).

I wasn’t very close to my dad, he wasn’t an easy person to be close to. I spent many of my teen and early adult years feeling hurt and impatient with what seemed like his selfish lack of interest in me. Over the last several years I came to an understanding about my dad that helped me feel softer toward him. This understanding is one of the rare things that is too personal to write about here, sorry. I regret that I didn’t understand him better earlier in my life, but I’m glad I got there eventually. And I’m very glad I did my best to try to help him feel safe and loved over the last year or so.

Things my dad gave me: a love of reading and mathematics, an affection for Star Trek (the original TV series), a rational mind, low blood pressure. He taught me how to play poker. He was a master storyteller. I find with his passing I feel alone in the absence of his kindred spirit. I miss thinking something through with him, both of us logical and dispassionate, neither of us being made to feel like an alien or a freak for being calm and detached. I miss knowing there is someone else in the world who thinks it makes total sense to eat the same thing for lunch every day. After my dad’s death I am faced with the realization that there is no longer someone else in the world who is like me in these intimate ways. I am now the only person in our family who is like us, and it makes me feel kind of lonely but also weirdly responsible, like now it is up to me to feel this space in the family by myself.

 

 

 

a synopsis of my dad’s death

My dad died three days ago, on Saturday, December 10, 2016. For now I just want to post a synopsis of what happened versus reflecting on how my family and I are dealing with the emotions and the tasks at hand after a death.

None of us saw this coming. The last time I saw my dad not on his deathbed was November 23, the day before Thanksgiving. It was a short visit, he was tired and wanted us to leave so he could sleep. Soon afterward, the nursing home experienced a very contagious virus outbreak. Dad contracted the virus and recovered, but the nursing home remained under quarantine until we received a call that my dad was dying.

When my mom, Kristin (my sister), and I got there, Dad was conscious but uncommunicative. A hospice worker expressed doubt that Dad was dying. We heard that Dad had been bleeding and vomiting blood. He had been given a vitamin K shot and seemed to be responding to it: evidence of bleeding had stopped. But he was having intermittent long (30-60 second) spells of apnea (stopped breathing), which is why the nursing home called us to come.

My mom and I stayed with Dad that day. He was agitated a lot of the time. He bent and unbent his “good leg,” crossed and uncrossed his ankles. He pulled off the covers and the pillows and persistently, obsessively, tore at his diaper, yanking and picking at it to get it off. These are the same things he had done when he was hospitalized after the stroke. One thing that was different now was that he raised his arms and waved them like he was conducting an orchestra.

At one point he gripped the handrails and twisted his body, seemingly trying to raise himself or get out of bed or shift himself or get closer to the diaper, I don’t know. I told him that I would help him but I was having trouble understanding what he wanted. He glared at me and said, sarcastically, “you poor baby.” These were the last words he spoke before dying three days later.

I spent the night at my mom’s house, 20 minutes from the nursing home; Mom stayed with Dad. The next day Dad didn’t open his eyes except when the aides re-positioned him, which was painful for him. He would remain peaceful for awhile and then start waving his hands and furrowing his brow and his breathing would get very labored, and we would request a sedative or pain medication. It would then take him awhile to settle down.

My husband came and spent the night with me at Mom’s house. On Friday, a hospice worker came and encouraged us to get Dad on a regular schedule of sedative and pain medication. The nurse on duty at the nursing home resisted this approach because she was afraid of “snowing” him, which means repressing his respiration and hastening his death. I had to be “bad cop” and insist on medication when Dad first started moaning and stirring, so we could stay ahead of the pain.

My dad’s former pastor came and prayed with Dad in the afternoon. Around 9:00 that night, Mom and I noticed that Dad’s spells of apnea were now regularly nearly a minute long separated by only 15-30 seconds of breathing. We called Kristin to come. The nurse on duty (different nurse) suggested giving Dad oxygen, for comfort. We continued giving him morphine fairly regularly (every 1.5-2 hours) but dropped the sedative since he was no longer waving his arms about.

When Kristin arrived, the three of us sat next to the bed and reminisced about our memories of Dad. We laughed softly at memories of him recording our haircuts in his diary so he would remember to compliment us, his terrible puns, the way he sang out the first lines of jazz classics at appropriate occasions (like “Stormy Weather”). Although his eyes remained closed, Dad leaned his head forward and grunted a little a couple of times, as if he was trying to join in. Then Kristin and I went into another room to give Mom time alone with Dad. We returned to the room about 1:00 a.m. Kris and I stretched out on the recliners to rest; Mom wouldn’t leave Dad’s side. Around 3:00, Kristin said she was going to go home (20 minutes away), but stopped first to softly sing Dad’s favorite worship songs to him. By this time the oxygen and morphine had eased Dad’s breathing: the bouts of apnea were less frequent and the breathing between them was easier.

Kristin came back at around 10:00 in the morning. Suddenly Dad began gagging and we quickly sat him up a little and called the nurse. He had a fever, which we had been told was part of the dying process. The nurse gave him some pain medication and re-positioned him. The photograph above was taken about three hours before he died.

I went to Mom’s house to shower and nap. Before I left I told Dad I was leaving for a bit and would be back, but that he should feel free to do whatever he needed to do. A couple hours later my sister called to tell me that Dad had passed. I went to the nursing home, and Kris and I packed up Dad’s things while Mom talked to a comforting hospice social worker. We didn’t have to pack things up right away — the nursing home workers said we could take all the time we needed — but we felt like occupying ourselves with the work. Aides cleaned Dad up. We took Mom home.

 

holidays

My family doesn’t celebrate Thanksgiving regularly. It isn’t a highly important holiday to us. This year is the first year that my sister has a child away at college, and we decided to get together while she was home on break and do a traditional meal. We didn’t discuss including Dad for several reasons. On the practical side, he’s wheelchair-bound and neither my mom’s house nor my sister’s house (the only feasible options due to distance) are accessible. Also we thought bringing him home or to my sister’s house next door would be confusing for him. He sometimes thinks the nursing home is his home.

The nursing home had a meal with turkey and all the accouterments on Thanksgiving Day. Family could reserve a place at the table for a fee. Since I was traveling to my parents’ town on Thanksgiving Eve for the Medicaid hearing (will blog about that after we receive the ruling), I saw my dad then. I spent Thanksgiving Day with my in-laws. My mom attended the nursing home meal but my dad ended up sleeping through it (he’d recently had a recurrence of atrial fibrillation (AFib) along with a fever and was still regaining his strength.)

On Saturday the other nine of us gathered at my mom’s house. Mom doesn’t have a table big enough for everyone so we served ourselves buffet-style and sat in the living room with compartmentalized Styrofoam plates. A member of my family blesses the meal before we eat, and there was some confusion about who should do this since Dad wasn’t there. After that there was the usual stuffing ourselves and complimenting the chefs and cajoling my almost-eight nephew to try the various dishes. I had come up with an idea for a Christmas present for Dad: a photo book of pictures of him with his family of origin and with us, created using Shutterfly. So after dinner I spent quite a bit of time taking photos and scans of my mom’s and sister’s print photographs. It wasn’t until my husband and I were driving home that I actually missed Dad at the event, which kind of made me sad.

My husband recently had the idea to take Dad out to a restaurant sometime. This requires hiring a transport service to bring him from the nursing home to the restaurant and back. We all agree it’s an excellent idea for our family Christmas celebration. I’ve made all the arrangements and restaurant reservations for December 18. I doubt that I’m the only one who’s a little nervous about it. Dad sometimes has paranoid delusions about spies or being poisoned or being in a foreign country. Also I suspect he won’t remember some family members he hasn’t seen much since he’s been at the nursing home. Mom’s concerned that he’ll have a bowel movement — which isn’t a big problem really since he wears adult diapers, but she’s worried he’ll be embarrassed. I know his physical stamina and tolerance for large groups are low even on his “good days,” so I’m planning for 1 or 2 hours max. We’re just going to give him his gifts and eat a meal and save the rest of the gift exchanging for later back at Mom’s house. I’ll let you know how it goes.

I haven’t seen my dad for over a week now, since that visit the day before Thanksgiving. My husband and I thought about dropping in while we were in town on “Thanksgiving Saturday,” but time ended up being too short. I went again yesterday, but while we were having lunch Mom received a call from the nursing home saying that they had been hit with a very contagious virus: symptoms include fever, diarrhea, and vomiting. They said Dad had started with the diarrhea and was resting in bed. They recommended staying away. I miss seeing him and feel actually a teeny bit anxious. My next visit there will be Sunday and I’ll make sure to see him no matter what.